ALS Patient Keeps us Grounded with His Mantra Amid Pandemic

In 2012, Gene and Barb Smith retired and bought a home in Cape May.  Their dream of retiring and volunteering at the shore had finally come true. Barb, a real estate broker and elementary teacher was always passionate about helping children, the homeless population, volunteering for Code Blue and providing food for the food pantries. Gene worked for 40 years for the YMCA, loved working with youth and Big Brothers mentoring hundreds of teens.
Then in 2014, the unexpected happened. Their son, Jason, 35 years old, married with two young daughters was diagnosed with ALS. They did not know much about the disease, except that it was terminal and a life expectancy of 3-5 years. The Smith family’s life was about to take an unexpected turn.
Fast forward to 2020 and today Jay is giving this disease the fight of his life.  He has lost all mobility and speech and is on a feeding tube and ventilator.  His wife works full time and he is in need of 24/7 care at a staggering out of pocket cost of $4,000 a week. But, defying the disease, his mind is perfectly clear and his mantra is “Focus on What You Still Can Do.”
It has been a tough year with the pandemic continuing to change all of our lives: too many cases, too many deaths, COVID fatigue, wearing masks, missing school, missing friends, experiencing loneliness and isolation. Despite it all- Jay would tell us to “Focus on What You Still Can Do.”
As a child, Jay was very active. He was an avid skier, baseball player, and skateboarder, along with being a big practical joker.  After Jay was diagnosed with ALS he was told, “Focus on what you still can do.” Which of course is easier said than done!  An emotionally painful part of the journey Jay had to sell his most treasured toys: his jeep, camper, a refurbished golf cart, and the most painful of them all: his ski boat. The sweet memories of teaching his girls how to waterski remain. Additionally, Jay vowed to create new memories.
True to form, Jay was focusing on what he still could do, a lesson for us all. As he began falling, he needed a walker, and then eventually a wheelchair. After some scary choking episodes, he went on a feeding tube. When Jay could no longer steer his wheelchair, he invented “Independence Drive”: a program for steering a wheelchair with your eyes. When breathing became difficult and labored, Jay went on a Ventilator. Jay continued to write blogs on Facebook, inspiring others.  He received advocacy awards.  He helped others with their expenses through his 90 Foundation.  He unveiled inventions such as “Vent” which filters out bacteria. He helped his daughters cook dinner and with their homework, all done with only his eyes and the entire time Jay remained “Focused on What He Still Could Do.”
Imagine your eyes being your most powerful weapon and your only weapon.  And yet if you asked Jay Smith how he is feeling in spite of everything going on around him, he is grateful to still be alive and blessed with the support from family and friends for the past 7 years. Yes, 7 years! He has outlived and defied the odds. 
Jay has always been a huge practical joker, mostly directed toward his dad. Apparently, family did something that totally prompted Jay to insist, “There will be payback.” True to his word, Jay posted an ad on Craig’s List- using only his eyes. The ad listed as a bar closing a needing to be relieved of the treasured Mechanical Bull. The payback came at the end of the ad by Jay listing his father’s cell phone number. A few hundreds calls later Jay had secured his payback.
Jay is happily married to Melissa and she is not only a hero in the family’s eye but superwoman as well.  “His wife has the toughest job of all,” say Jay’s mom, Barb. “Melissa is working full time, managing the household, constantly overseeing caregivers, raising two girls and taking care of Jay.”
The reminder to “Focus on what you can still do” is on continual repeat for the Smith family. For the past 7 years the family has hosted successful in-person fundraising events. However, with the nature of this year a virtual event was born and became essential. “DoItForJay” has been deemed the theme this year. In addition to a new event format some brave volunteers have been recruited. Several have offered to shave their heads: Brian Finger, Principal and Ric Weidel, owner of Weidel Realtors. Nora Stern Kushnier, sixth grade student will be eating a cricket and getting Jay’s face tattooed on his back is Tim Smith, Jay’s cousin.
Please join us on January 23rd 7-8 PM for our virtual event, bid on some great items and be entertained. Hope you can join us. http://bidpal.net/doitforjay